Goals, Proprioception and Neuroplasticity (Part 11)

Goals, Proprioception and Neuroplasticity (Part 11)

After a couple of months of attending the rehabilitation unit I had a review, and during it I was encouraged to set goals. I told them I had two main goals that were important to me. The first was, I wanted to be able to attend my nieces’ wedding in August. The second was, I wanted to be able to walk my dog Dexter by myself, and I set a date that I wanted to be doing that by, which was 3/8/15.

To help me reach the goal of walking Dexter myself, an OT assistant visited to help me take him to the playing fields at the end of my street. I’ve mentioned in a previous blog that I had problems with bending forward, if I bent too far I would lose my balance and fall forward, and I could never judge when it would happen, one minute I’m okay and then the next minute this ‘klunk’ in my head would occur and I would fall forward! You are probably wondering why I’m making that random point in the middle of talking about walking my dog! It’s relevant because Dexter had a poo on this walk and the OT assistant was too squeamish to pick it up! So I said I would try but that I was worried I would bend too far and fall face first in dog muck! So she held on to the hood of my coat as I bent to pick it up!

My diary entry for that day (July 20th 2015) read: “I was so happy at managing the walk down to the playing field with only a few wobbles, it won’t be long before I’ll be walking Dexter on my own”. I then made a re-entry – under that original entry – on December 19th 2015, and this new entry said: “how wrong I was”. I had truly believed that I would be able to manage to go out on my own with Dexter within the next month or two, that the wobble that I spoke of would disappear once my balance had improved a bit more through the physiotherapy exercises I was doing. However, I go on to write in that second entry of December: “when I made the original comment I hadn’t been to visit Miss Myles (the neurosurgeon who operated on me). I had an appointment with her in the September and she explained the reason for the ‘wobble’”.

When I was at the appointment with Miss Myles I had told her that there had been several occasions when I would fall for no reason, it was as if my legs gave way. The worst time was when I was with Lesley (my partners mum) and I was trying to walk up an embankment to get a seat by the river. The moment I went to take a step up this slight embankment I crumbled to the floor. Lesley grabbed me and tried to help me back up but when I stood up the same thing happened. I bum shuffled back on to even ground, but I had no explanation for what had happened. Miss Myles explained it to me. As a result of the cyst stretching and damaging nerves in the brain stem and cerebellum, my proprioception had been impaired. I had never heard of proprioception before, but after learning what it meant it explained a lot of experiences I’d had before and after surgery. I will try my best to explain what proprioception means, although it took me a while to get my head around the meaning!

Proprioception is the sense of knowing where your body parts are in space. For example, if you were to close your eyes and wave your hand about, you will know where your hand is in space, even though it’s not being detected by any of the other senses. That made me remember the months before I knew about the cyst, I use to wake up and have the bizarre feeling of not knowing where my body was. I would lay in bed and look over my body and only then could I raise my arms or bring my legs out of the side of the bed. I use to think I’d drank too much the night before and my brain was still ‘alcohol foggy’!

Proprioceptors – sensory receptors located in muscles, tendons and joints – relay information about motion, tension and position to the brain and that’s what makes us aware of our body position and movement in space, these are unconscious processes. Without proprioception we would not be able to walk without watching where we put our feet. And that is why I kept falling or stumbling, and more so when I walked on uneven terrain or gradients, my brain wasn’t getting the information that there had been a change underfoot and so didn’t know to adjust my posture and balance to compensate for that. Miss Myles told me that my vision was the only thing that was giving my brain this information, so I needed to look at where I was walking at all times. Knowing this helped a bit with my mobility, but sadly, I also found that my brain didn’t just need to see, it also needs to concentrate on walking, so even if I’m looking at where I’m walking I still stumble, and this is because my brain can’t filter out sounds and sights. So, for example, if a car horn beeps, or a dog barks, my brain gets distracted by the sound and thus loses focus and attention on walking and that’s when I’ll stumble.

Miss Myles also warned me to be careful with the dark nights drawing in, as I would be more at risks of falls as the brain struggled to see where I was walking. This got me thinking, what would happen if I tried to walk with my eyes shut! Stupidly I tried it, if I stayed still with my eyes shut I was okay for a few seconds, but after that I started to sway. But if I tried to walk, it was the strangest thing, I couldn’t even lift my leg, when I tried it was as if there was a magnet attached keeping it locked to the floor. I told the physiotherapist what I had tried to do, she was horrified! She said I could have fallen and seriously hurt myself and not try do it again…I still try to do it to this day!

Miss Myles did offer hope with regard my neurological deficits, she said the brain was amazing in that it could rewire itself, this is known as neuroplasticity.  So for the parts of the brain that were damaged, rewiring of the brain can make it possible for a function previously managed by that damaged area to be taken over by another undamaged area. It was likened to a diversion in a road. The quickest, smoothest route to get from A to B has a diversion in place. This diversion takes you a longer way round and along a bumpier, windier road, but it still gets you to your destination. So too, neurons in the brain create new pathways to compensate for the damaged pathways in order to carry out a task, it may take longer for that task to be done, and it may not be as efficient as before, but at least there is hope of completing it.

This appointment with Miss Myles helped me understand more about my neurological deficits, and offered me hope and made me more determined to do everything I could to become the best Elaine I could post-surgery.


Small World, Big Milestones and Goodbye Edinburgh! (part 7 of I’m a 40-year-old blogger virgin…!)

Small World, Big Milestones and Goodbye Edinburgh! (part 7 of I’m a 40-year-old blogger virgin…!)

As I was wheeled in to a ‘normal’ room from the high dependency unit I heard a familiar voice, one that I never imagined I would hear again, and if I’m honest, not one that I particularly wanted to hear again! My first reaction was I must be hallucinating again! But after the initial few minutes of hearing her voice turned into hours, I came to the conclusion that, I unfortunately wasn’t hallucinating it! I’m going to call this person ‘Ms S’, she was a former resident at my place of work, and at that time, she had a very challenging and demanding personality, and this continued to be the case here in Edinburgh! I couldn’t believe my misfortune at having her as a neighbour, all I wanted/needed was peace and quiet to recover, and all I got was a buzzer happy, chronic complainer in the bed next to me!

It turned out to be the ward of small worlds as the woman in the bed opposite me (who I’d never met before) knew my partner, my best friend and was a cousin of my ex mother-in-law!

On the Monday (one-week post-surgery) the physiotherapists who had visited me on Friday returned. At their last visit they had helped me to stand (not very successfully!), today they wanted me to try take a few steps. As they helped me to my feet I was unsteady, but I was determined to take a step. With the physiotherapists either side of me holding my arms, I managed to walk from my bed to the ward door (about fifteen feet) and back!

Also on Monday I was visited by my best friend Jill, we have been friends for 25 years, and despite all the pain and trauma of the last week, I turned into an immature giggling school kid – as is the usual when we are in one another’s company! I think the immaturity and giggles started the moment I told her that she had sat on my ‘pee bag’!  It was great to see her and it really lifted my spirits.

Tuesday proved to be an eventful day! The speech therapist was pleased with the progress of my swallowing, she had been visiting every day trying me with different food and drink consistencies, and although I still had a feeding tube in, she decided I was ready to try puréed food. Now maybe most people would get excited at the thought of a meal after eight days of being fed through a feeding tube, but, some residents at my work are on puréed meals, and trust me when I tell you they are anything but appetizing!  So although it was a milestone, my stomach wasn’t celebrating at the thought!  Here’s a photo of that first meal. This picture was me finished with the dish, I couldn’t force feed myself anymore of it…and that wasn’t because I was having trouble with swallowing, I just couldn’t stomach it!  Another lesson learned for when I return to work to those residents who have to eat this every day!  And in case anyone was wondering what it was, it was corned beef hash!

pureed meal


Another milestone from that Tuesday was I had the catheter taken out! (Otherwise known to my friend Jill as a pee bag!) Once the catheter was out I had my first trip to the bathroom where I got to look at myself in the mirror for the first time.  But I couldn’t see myself, my vision was too blurred all I could see was the outline of my face but not any detail, it was a bit unnerving and made me worry that I might be left like that.  I raised my concern with staff and an appointment was made for me at the eye clinic.


And the final milestone for that day was I had my stitches taken out!  If you’re squeamish you might want to quickly scroll past the next picture!  But for those who aren’t faint-hearted, I decided to include a photo of my wound just after the stitches had been taken out!

photo 1 [2736]


When the consultant and his team did their rounds on the Wednesday they were really pleased with my progress and were talking about the possibility of me going home.  I was so excited at the thought of being back home with my partner Lindsay and our dog Dexter!  I told the speech therapist and physiotherapist the good news. Unfortunately, they didn’t share my enthusiasm, the speech therapist was concerned that I still had the feeding tube in and she had arranged for me to have a videofluoroscopy swallow assessment (a video x-ray of my swallow).  The physiotherapists were also concerned as I was still unable to walk without their assistance and they felt there was still much more to be done before going home could be considered. They said that they wanted to give me the best start at the beginning of my recovery so that I can become the best I can in my long-term recovery.  They went to talk it over with the consultant and, as a result, going home was put on hold.  At the time, I felt absolutely deflated and if I’m honest I was angry at them for over-ruling the consultants decision.  When I look back on it, knowing what I know now about the early days of recovery being crucial, I am grateful for their care and concern and completely respect what they did.


Thursday proved to be a busy day! Firstly, I was taken to the physio gym for the first time!  Only to be told all I would be doing would be standing in front of the plinth and stacking plastic cups on top of each other at different distances on the plinth.  I was hoping to go on a treadmill or something to improve my walking! (Again, with hindsight, I now realise the ridiculousness of my expectations!).  So with a slightly petted lip I set about building a plastic cup tower, only to discover that if I bent too far to try to reach the plastic cups (which had been moved out of easy reach) I toppled over.  And that was the point of the exercise, it wasn’t a simple case of practice walking and I’d be okay, my entire ability to balance was off.  Another point to the exercise was to test my coordination, and as I reached for the cups I would miss picking them up, my arm would either over/under-shoot the cup or go to the left or right of it, it took a lot of concentration to coordinate my movements.  At the time I had no understanding of why this would be affecting my walking.  If it was explained to me then I don’t remember, or maybe I didn’t comprehend what I was being told. I now have a better understanding of how, in order to be able to walk, your body continually needs to balance itself and coordinate limb movements.


After physio I had the appointment at the eye clinic.  The appointment was in the out-patient clinic on the ground floor, I was taken down in a chair and left, I felt very self-conscious sitting in front of the general public in my pyjamas and fetching white support socks!  The ophthalmologist told me the nerves had been damaged as a result of the pressure of my lying face down for so long during surgery.  The damage was quite severe and I was told it was an unknown whether it would improve, or if it did improve, by how much.  It was a wait and see situation.  In the mean time I was given a black eye patch so as the double vision wouldn’t affect my efforts to walk.


In the afternoon I had an appointment at the speech and language department for the video x-ray assessment of my swallow. Just before I went to it, I had been trying to adjust my feeding tube myself as it had been knocked during the eye tests.  I somehow managed to nearly pull it out!  The nurse had to take it out and I begged him to leave it out!  He said he would leave it out until I returned from my appointment, but because I wasn’t managing to eat the puréed food he would need to insert it again.  I explained to the speech therapist what had happened and she said that I was able to leave it out on the condition that I ate and drank enough and she would monitor my food chart.


During the assessment I was asked to drink barium liquid, I’m a fussy eater so it takes me some time to pick up the courage to taste anything new, so I asked if I could dip my finger in it first, as I couldn’t just take a sip without knowing what it tasted like!  To my relief it tasted nice!  I know I would still have had to drink it even if it tasted awful but it was the unknown of what it was going to taste like that I hated!  As I drank it, x-rays were taken of my swallow to get a better understanding of my swallow process.


The following day the speech therapist had a surprise for me! Instead of having to eat custard she wanted me to try something new…a custard cream biscuit! Proper food!  At first I coughed on the crumbs so spat it out but I tried again with more success!  I wasn’t quite ready to eat a packet of biscuits but it gave an indication of where I was at with regards consistency.  She decided I was able to try a diet of soft foods instead of puréed food!  She also had the results of my video x-ray. The results showed that I had weakness in my mouth and throat and a delay in my swallow (the weakness in my mouth made it hard to hold on to food and drink in my mouth and made it harder to chew food).   But the encouraging news was that over the last ten days I had already made huge progress with my swallow.   Hours after waking from surgery I was unable to hold a mouthful of water in my mouth and I choked as it went down the back of my throat as I had no swallow, so to come from that to being able to eat soft food and slightly thickened fluids in ten days was huge progress.


Later that morning I was taken to the physio gym.  I was trying to walk a figure of eight around cones, if the physiotherapists hadn’t been standing next to me I would have fallen.  It brought it home to me why I wasn’t ready to be sent home.  I had made progress in walking – as long as it was in straight lines!  We practiced walking and turning with crutches but I couldn’t coordinate taking steps and moving my arms with the crutches, so I was given a different walking aid.  Ladies and gentlemen let me introduce you to Mavis (so named by my work colleague Sharon!)

photo 2 [2738]

Mavis turned out to be an absolute blessing, we became inseparable!  She brought me a bit of independence, with the help of Mavis I was able to get up and sit in the chair next to my bed, I could walk to the bathroom instead of being taking in a wheelchair (although I still needed to buzz for assistance as I wasn’t allowed to go on my own).  On the Saturday Lindsay and her mum, Lesley, took me a wee walk around the hospital with the help of Mavis!  I was exhausted when I got back to the ward but happy with my little jaunt!

For the last two weeks I had needed assistance of some form to wash myself, it was a bed bath the first few days and then full assistance in the bath and shower. But on the Sunday the carer asked me if I wanted to try to shower myself and she would stand by in case I needed help, what an amazing feeling it was!  But even though I was sat down in the shower I began to tire so she needed to step in to help rinse me, but I was grateful that she let me try even though she would have known it would be more time-consuming, I felt she was helping to promote my independence.

On the Monday (two weeks after surgery) the consultant again spoke of returning to Dumfries, but this time they didn’t talk about going home they suggested a transfer to my local hospital.  I wasn’t too disappointed at not getting sent straight home, after I nearly fell in the gym and after a choking episode a few days ago, I decided I would rather wait a bit longer before going home because I didn’t want to put any worry or onus on Lindsay with regards falls or choking.  Instead I set my sights on a transfer and was happy that I would be a step closer to home and it would mean Lindsay didn’t have the daily five-hour round drive to visit me, instead it would be a ten-minute drive across town!

On the Tuesday and Wednesday my transfer fell through, I admit to shedding a little tear on the Wednesday but then I made myself look at the bigger picture, I had been there seventeen days a few more wouldn’t hurt!  By the end of the day I was told that the transfer was back on for Thursday, I was so excited I couldn’t sleep and I got myself up at six to pack my bags!  At 8.30am my transport arrived and I was saying my goodbyes I got tearful, the staff had been outstanding.  At my most vulnerable they had cared for me with respect, dignity and genuine care and I was so grateful for it all.

As I was ready to be wheeled out of the room the transport support worker asked me if the rollator (Mavis!) was coming with me and I said no it belonged to the hospital. At that point the ward sister stepped in and told me to take it and she wouldn’t tell if I didn’t!  I was so grateful as I had been worrying there wouldn’t be one available in Dumfries.  When we got to the lift at the end of the ward, the nurse who had taken care of me in the high dependency unit came running down the corridor shouting “wait”!  She gave me the biggest hug and told the transport staff to take care of me as I had been her star patient! Needless to say I started crying again!  And so it was with a thankful and somewhat heavy heart I said goodbye to ward 33, but I was looking forward to the next chapter in my recovery.



Hoists, Hallucinations and Goodbye High Dependency Unit! (part 6 of I’m a 40-year-old blogger virgin…!)

Hoists, Hallucinations and Goodbye High Dependency Unit! (part 6 of I’m a 40-year-old blogger virgin…!)

On the third day after surgery (Thursday) I was told I would have a bath, up until then I had only received bed baths which were painful as I was rolled from side to side and sat forward slightly, but I was also worried about the pain of being moved with a hoist to the bath. It was an unpleasant experience in the hoist and, as I suspected, painful too. I didn’t feel safe even though the sling that was used was a full-bodied one which is like a cocoon, I felt vulnerable; I think it comes down to feeling a loss of control over all your movements and needs. For the first time since surgery my hair was washed, it was a strange sensation as the nurse touched my head, it felt numb and yet painful at the same time, and even down to this day it still has a degree of numbness when it’s touched, but thankfully less painful. After the bath, the only way to dry me was on my bed and so I still needed to be rolled to be dried and to change the bed sheet, I was exhausted after it all.

On a side note, I’m a carer in a nursing home and as I reflect back on my experience of being hoisted and receiving full assistance with my mobility and personal care it gives me incredible insight in to what some of my resident’s experience on a daily experience.

During the first day’s post-op I would often hallucinate! When Lindsay came to visit me on the Thursday I told her she had just missed Alan, Ian and Kelly (good friends from Hull, England).  I was convinced they had been to visit me that morning, however, when Lindsay asked for a bit more detail and I said they had arrived with her dad…she knew I was talking gibberish!  Other examples of my hallucinations were I kept seeing the ward equipment – like monitors and over bed lamps – as dark, menacing monsters or spies!  Also, there was a doctor who had shoulder length hair, and I was convinced that every time he entered the HDU he would introduce himself by saying: “Hi, my name is David, but I use to be known as Sarah”, bizarre and untrue (I asked a nurse a week later if I had imagined it or if was true!).  My hallucinations also manifested themselves as auditory hallucinations.  I often heard music being played through the walls, one night I couldn’t sleep for the ‘music’ and I asked the nurse if it could be turned down…only to be told there was no music playing!

It had been arranged that on Thursday afternoon Lesley and Allan (Lindsays’ parents) would travel up on the bus to visit me and then they would return home with Lindsay as it was her final day staying in Edinburgh.  I felt sad that she wouldn’t be close by, but I was over the worst and our dog – Dexter – would be missing his mummy!  And she continued to drive up to visit me on a daily basis for the next two weeks!

On the Friday I had a surprise visitor – this one was not a figment of my imagination! – my colleague and good friend Dot travelled up with Lindsay, it was a lovely surprise! Dot has since told me that when she saw me she got such a shock at how ill I looked and how wee and helpless I appeared.  She also said she witnessed something beautiful, she told me that Lindsay was staring intently and smiled adoringly at me when she told me I was looking so much brighter.  And Dot said I was looking at Lindsay and it looked to her as though I was searching Lindsays’ face and hanging on to her every word as if wanting to believe her loving reassurances.  Dot said it almost brought her to tears but she didn’t want me to see her cry.  Her support to Lindsay that day was worth more than anything money can buy and very much appreciated. Oh and apparently they went sightseeing too (in other words they got lost!!).

Later on that day I was visited by two physiotherapists who were there to help me to stand up.  Up until that point I hadn’t given standing or walking much thought, I assumed I was being hoisted because I was too weak/tired and groggy to walk, it never occurred to me that there would be a problem.  However, as I went to stand up my legs buckled, it was only because the physios were holding me on either side that I remained standing.  I got a fright and I couldn’t understand why my legs wouldn’t support me.  The physiotherapist told me not to worry, they would let me rest over the weekend and they would return Monday to try again.

On the Saturday the nurse had suggested she hoist me on to a chair so that I could surprise Lindsay!  I was shocked at how such a simple task made me feel exhausted and even though I tried so hard to stay in that chair until Lindsay got there, I eventually had to admit defeat and asked to go back to bed before she arrived.  But I managed it the following day and Lindsay and her mum were so pleased to see me sat in the chair as it represented progress on my part!

There were several times in my first week I would be told off by the nurse as I would try to tolerate the pain, one, because I’m stubborn and, two, because I didn’t want to bother her (because I had a feeding tube it wasn’t a simple ‘here’s a pill to swallow’ it was a bit more intricate at getting the medication through the tube, that’s why I thought I was being a bother!) but that would result in me leaving it too late and, just like on my first night, the pain seemed to go from being bearable to excruciating and would have me in tears.  Believe it or not, it took me over a week to finally give up my stubbornness and my concern at bothering the nurses and ask for pain relief.  Even now I still get it wrong and think I can manage the pain without taking medication!

I was asked by the consultant neurosurgeon if I felt up to being asked questions about my symptoms by two medical students, he said that although some of my symptoms were common to other illnesses my diagnosis was rare.  I was more than happy to as it may help future doctors be able to identify a rare and life threatening case. During the rest of my stay I was asked several more times to be a ‘guinea pig’ for the students, it was fascinating listening to them fit the different symptoms together to try arrive at a diagnosis.  Although no one arrived at the correct diagnosis of an arachnoid cyst on the brainstem, they were able to rule out what it couldn’t be, and one girl was able to say my brainstem had been compromised but she didn’t know what the cause was.  It showed me how complex the brain is and what a vast amount of knowledge is needed by the medical students.

By the Sunday it was decided by the consultant neurosurgeon that I was now able to be transferred to a ‘normal’ room on the ward and out of HDU! I was happy because again it showed progress, but I was also a bit sad as I had grown close to the nurse in HDU and felt safe under her care.

The Darkest Day Of My Journey (part 5 of I’m a 40-year-old blogger virgin…!)

The Darkest Day Of My Journey (part 5 of I’m a 40-year-old blogger virgin…!)


On the first night after surgery I was woken up regularly by the nurse for neurological checks, she became increasingly concerned with my breathing as it had become laboured and shallow. The nurse called the doctor, who, after observing me from the foot of my bed, told her just to continue monitoring me overnight.   She gave me an oxygen mask which I kept lifting off and resting on the bridge of my nose much to her annoyance! As the night went on my breathing deteriorated a little more and I began panicking because I couldn’t breathe but that was only making the situation worse, so the nurse sat by my bed and kept offering reassurances and calmed me down, I drifted in and out of sleep until morning.

In my previous blog I mentioned I felt remarkably well after I came round from surgery, well that initial feeling was rapidly disappearing, I felt awful, I was struggling to breathe, I was throwing up and the pain in my head was sheer agony.

On the morning after surgery I started choking on my own saliva, I couldn’t cough to clear my throat as I had no coughing reflex and I couldn’t swallow as the nerves that controlled these actions were in ‘trauma’ from the surgery*, and I remember feeling an overwhelming sense of panic and dread as I couldn’t see the nurses and I wasn’t able to shout out for help.  There was a young guy in the bed diagonally across from me, who thankfully saw my distress and struggle and called out for a nurse, the nurse called my name asking if I was okay, that is when I realised the nurse was only a few feet away from me attending to the patient in the bed next to me with the curtains shut, but I still couldn’t talk as I struggled to clear my throat and breathe. She came out to check on me and ran to my side, I can’t remember what advice she gave or if she intervened with some action but I was sick which helped clear my airways. It may sound melodramatic now as I type this, but it was a frightening experience and one I will never forget and still fear today, I had the horrific thought I was going to choke to death. Sadly, it wasn’t a one-off incident, this continued to occur over the next couple of days and was often resolved by my being sick.

* the area of the brain that is responsible for initiating reflexes for swallowing and coughing and is also responsible for regulating breathing is the medulla oblongata, the lower part of the brainstem, which is where my cyst had been, which explains the ‘trauma’ to the nerves housed in that area and also why I was having difficulty with my swallowing and breathing.

Later on that morning the nurses gave me a bed bath, I felt an overwhelming sense of helplessness, vulnerability and embarrassment (in my previous blog I had hinted at what could be more embarrassing than going to hospital with hairy legs…well this was just one of many of those things). However, the nurses’ sensitivity and attentiveness helped to relieve some of my feelings.

During the day I was visited by a speech and language therapist to assess my swallowing. She gave me some water to drink, but I couldn’t take a sip of water without choking, it’s hard to describe not being able to swallow when it’s something we do hundreds of times through the day without really thinking about it. But as I took that sip of water I couldn’t activate the swallowing mechanism, neither could I hold on to the water in my mouth, which resulted in the water trickling down my throat, but without the swallow reflex it caused me to choke (similar to when your food or drink goes down the wrong way).

The speech therapist decided I would need to have a feeding tube for the foreseeable future, I asked what a feeding tube involved and I didn’t like the answer very much, a tube would be fed through my nose in to my stomach! It turns out the procedure wasn’t so bad!

In the afternoon I was moved to another High Dependency Unit (HDU) on the ward, this one only required one nurse to stay in it at all times and had three beds.

When Lindsay came to visit me I was still upset by my breathing and choking incidents, and unbeknown to me at that time, Lindsay has since told me that when I was relaying the incident to her I had said to her I wish I had died. I have no recollection of saying that to her and I can’t remember feeling like that, but it saddens me to think she was staying over in Edinburgh on her own and had the burden of hearing those words.

I asked Lindsay to ask the nurse for a buzzer/call button as I had a fear of choking again, the nurse tried to explain that she would always be there as the HDU could never be left unattended, but nothing would relieve my fears because the nurse had only been a few feet away on the previous occasion but I had been unable to get her attention, and so Lindsay convinced them to let me have a buzzer. When she rang the HDU that night at about ten (she did every night) to see if I was settled she checked to make sure I had my buzzer! I slept with the buzzer in my hand all night!

During the night I began choking again and the nurse gave me suction to clear my throat, by the following night I was able to use the suction tube myself which gave me a wee sense of control over the choking fear. Over the next few days I was choking less but the fear of choking to death remained, and still does to this day.

The speech therapist continued to visit, but as I was still unable to swallow sips of water she tried a thicker consistency…cold custard! I detest custard, and cold custard is just the produce of the devil! It amused Lindsay no end that I was being spoon-fed cold custard! But despite the thicker consistency I was still unable to swallow (although I’m not sure if that was down to an impaired swallow reflex or I hated the cold custard!) so I had to continue with the feeding tube for my medication, fluids and food.

Happy Brain Surgery Anniversary – 1 Year Today! (part 4 of I’m a 40-year-old blogger virgin…!)

Happy Brain Surgery Anniversary – 1 Year Today! (part 4 of I’m a 40-year-old blogger virgin…!)

Wow I can’t believe it’s been a whole year since my surgery, it still feels surreal one year down the line!  It seems rather fitting then that this blog writes about my surgery day on my first anniversary!

With only 72 hours until I went to Edinburgh for brain surgery I suddenly had the most horrendous thought…my legs needed shaved!  What could possibly be more embarrassing than being seen with hairy legs? (it turned out quite a few things were more embarrassing but I’ll explain that at a later date!).  By this point though I couldn’t control my arms and legs very well, they would often twitch/jerk at random moments and my movements were stilted and clumsy, so holding a sharp instrument against myself was not a good idea!  That’s where my loving, patient partner came to my rescue!

I’ve a funny story to tell about my partner Lindsay, she wanted to stay in Edinburgh for a few days after my operation so she could be closer to hand for those first few days of recovery (we lived a four-hour round trip from the hospital).  As her mum and I were browsing online for a B&B/hotel for her, she casually tells us not to bother booking anywhere as she would sleep in the back of the car with our dog – Dexter the black Labrador!  I looked up thinking I would see a twinkle in her eye as she tried not to laugh at her own joke, but no, she was deadly serious!  Needless to say it was a resounding no from her mum and I!

As operation day approached my only noticeable anxiety was finding it hard to sleep, but if you were to ask me at that time if I felt nervous about going for brain surgery I would have said no.  To me it was just something that had to be done – no ifs, buts or maybes.

On Monday 20th April 2015 Lindsay and I set off to Edinburgh at the ungodly hour of 5am! As we approached Edinburgh I decided I would post a final message on Facebook, here is a copy of that post:

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So even down to the final hours before surgery I refused to be sombre about the occasion!  Everyone who knows me will tell you I am Christmas mad and so this post seemed very apt for me, my mentality was if these were to be my last words to my friends I wanted them to be fun and upbeat!

We were 15 minutes late for the ‘check in’ time we were given so I was met by a waiting neurosurgeon and taken into a cubicle for last-minute health checks by the nurse (blood pressure and temperature) and then given the all clear for surgery.  I was wheeled down to theatre on a chair and as we approached the double doors to the main corridor leading to theatre that was where Lindsay and I had to say our goodbyes.  As I turned to Lindsay to say goodbye I was overcome with emotion I couldn’t speak for the lump in my throat, for the last 4 weeks I had kept it together and had been big, brave and strong – for Lindsay as much as myself – but at that moment I admit to having a wee wobble – lousy timing emotions!  I managed to squeak out “I love you” before I was wheeled away through the double doors and the tears began to fall.  The porter put his hand on my shoulder and said that’s the part that gets everybody.

The next part is all a blur!  I met with the anesthetist who I had met at my pre assessment, and she put a canular in, but what was said after that, I can’t remember!  I thought I would remember counting backwards or something dramatic (I’m sure they do on t.v!) while the anaesthetic took effect but I don’t remember a thing!  I had been told that after surgery I would be taken to an after surgery room to be brought round from the anaesthetic and several neurological tests would be done to make sure everything was as it should be, but I don’t remember that stage either.  My first memory was of Lindsay looking down at me and I was in the high dependency unit (HDU), I remember thinking at that time “I feel remarkably well considering!”

The neurosurgeon came to visit me and told me there had been a complication during the procedure and as a result I had been in theatre for five hours instead of the expected three.  Now that was of no consequence to me as I was out for the count for those five hours but my heart ached for Lindsay as I thought of the anxiety she would have felt waiting all that time for news, it must have been excruciating…as it turns out not so much because Lindsay had gone back to the car and fell asleep for most of it!  (For those who don’t know Lindsay, napping is what she does best, especially under stress!).

The complication the neurosurgeon referred to was that the route they had originally taken to reach the cyst had not been successful, so they had to retreat and take a different route.  They had to lift the cerebellum in order to see and reach the cyst and it had attached itself to some pretty important nerves (well it had had 39 years to make itself at home!) so it was never going to be possible for it to be removed completely, but they were pleased they had been able to remove as much as was safe to do so.  And despite the original setback the surgeon had said that the operation had been a resounding success and no unnecessary damage had been knowlingly done to any surrounding nerves, tissue or muscles!   After seeing first hand the position of the cyst she reiterated what she had said to me at our first meeting that she was surprised I could still walk, talk or swallow.

As I came round a bit more It dawned on me that I couldn’t see too well, my sight was blurred and I had triple vision,  Lindsay told me later that when I looked at her my left eye was directed at her but my right eye was looking as far right as it could, she found it very disconcerting as she talked to me!

The neurosurgeon assured me that the damage hadn’t been caused by surgery itself in as much as no optical nerves were damaged during the procedure, rather the damage would have been caused by the pressure to my eyes as I lay face down for the five hours, and it would be an unknown as to whether it would improve and, if so, by how much (I’ve came to slowly understand and accept over the last year that a lot of the neurological deficits experienced after brain surgery are very much an unknown as to regards to whether they will improve and, if so, by how much).

After Lindsay left I settled down to sleep, I had an intravenous patient control pump (morphine) which allowed me to self-administer so that I could control the level of pain relief as and when I felt I needed it.  I felt a niggle but didn’t bother pressing the button, the niggle grew to being a wee bit painful but again I refrained from pressing the button, I’d put up with a lot of pain before the surgery and so still didn’t think this warranted a dose of morphine.  How wrong that proved to be, because from being a wee bit painful it seemed to jump all other rungs on the pain ladder and shot to the most excruciating and unbearable pain imaginable.  After I pressed the button there was a period of time – called lockout time – in which I couldn’t press the button again, even if I did the pump wouldn’t dispense the medication.  After what seemed like an eternity the pain started coming down to a tolerable level but I continued to monitor that button and as soon as the light came on (that meant it was ready to dispense again) I pressed it!  There was no way I was going to try to be big and brave again after the pain I had just experienced!

I’m not sure how much time passed with me doing this but I must have fell asleep eventually!


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I escaped from hospital…but now I want to go back! (part 3 of I’m a 40 year old blogger virgin…!)

I escaped from hospital…but now I want to go back! (part 3 of I’m a 40 year old blogger virgin…!)

In my last blog I think I mentioned once or twice that I wanted to escape from hospital! But after the euphoria of being allowed home for the weekend had worn off I began to feel a bit vulnerable walking about in the outside world. What if the ‘thing’ on my brain started misbehaving?! But me being me I put on a brave face and hid my concerns from everyone, but there was a sense of relief at returning to hospital on the Sunday afternoon. I entered the hospital armed with munchies, an e-cig and a new-found determination to be patient and stay in for as long as it took to get things resolved.

On the Monday I had an MRI scan and underwent further tests, I was asked to say the phrases ‘British Constitution’, ‘baby hippopotamus’ and ‘West Register Street’ I tried to get my tongue round them but – it’s hard to describe, it was like trying to talk after being at the dentist – but then this wasn’t a new thing for me I’d always felt it a struggle to speak clearly. But up until now I’d thought it was just the way I spoke, to suddenly learn that it was caused by the cyst and that the correct term for it was dysarthria was all a bit overwhelming. I say that because the way I spoke had always made me feel very self-conscious, it often stopped me initiating conversations with strangers or speaking out in a group of people, and so affected me socially. My mind starting wondering what if? What if this cyst was removed would I be able to speak ‘normally’? To someone who had been so self-conscious and inhibited by their speech this was a tantalising prospect.

I was asked to repeat the heel to toe test that I had originally attempted at the doctor’s office, with the same consequences – I stumbled off to the side. I was also asked to touch my nose with my finger, and I thought well that’s an easy one at least I’ll pass one of their tests! I only succeeded in poking my cheek with my finger!

The next day the doctor explained to me that my scan along with their report on me had been sent to the neurosurgical team at Edinburgh hospital and I could go home and Edinburgh would contact me soon to arrange an appointment to see the consultant neurosurgeon. I asked if I would be able to return to work until I was contacted, I’m sure she tried to cover up the ‘is she kidding’ face when she said that really wouldn’t be recommended, I should go home and rest until I hear from Edinburgh!

I went home and started googling all the unusual medical words that were on my discharge letter! There were sentences that I had no idea the meaning of, such as, “there was effacement of the fourth ventricle, medulla and adjacent structures with no hydrocephalus”, but even after googling I soon gave up trying to understand! Instead I lay on the sofa and waited impatiently for the call from Edinburgh!

There were times I would feel guilty for not being at work, my reasoning was I had managed to work before regardless of these symptoms, but then there were days my symptoms were very prominent and I struggled with daily living.

After only a week after being discharged I received the call from Edinburgh and I was offered an appointment to have a ‘chat’ with the neurosurgeon. At this point, I was alarmed at the terminology ‘chat’ as I had been googling arachnoid cysts and had read that a lot of people were having difficulty convincing their gp or neurologist that their A/C was the cause of their symptoms, and, on that basis, they were being refused treatment for the cyst. Every forum and Facebook page I entered to do with arachnoid cysts all had the same underlying story, people were being told that arachnoid cysts were asymptomatic and they had been an incidental finding and not the actual cause of their symptoms. And so I travelled to Edinburgh with a certain amount of anxiety that the ‘chat’ I was about to have would be along the same lines.

I needn’t have worried, although a lot of what was said to me in that ‘chat’ was a blur the main thing that stuck in my mind was the neurosurgeon had said “obviously you can’t be left like this and so the cyst will have to be operated on”. The relief that my symptoms and the cyst were being taking seriously was immense, but then it should be said that at no time had anyone in the medical profession led me to believe otherwise it was only what I had read on the internet, so it made me realise that googling everything wasn’t always a good idea! (That’s not to say I always remember that pearl of wisdom!). Lindsay and I were shown my MRI scan and we were shocked at the size of the cyst and how obtrusive it looked. I was told it was a surprise I could still walk, talk and swallow with the damage that the cyst was causing to my brain stem. It felt surreal to me then and it still does today.

Shortly after this appointment I received a letter from the neurosurgeon which gave a very detailed account of what would take place through the surgical procedure. My favourite part of that account was “I will gently lift the brain up and the cyst should be apparent under the cerebellum”, another surreal moment, to think that somebody was going to be lifting my brain up!

The letter also gave me a detailed list of all the risks attached to the surgery, they ranged from “increased neurological damage, possible damage to the nerves to your eyes, face and throat causing swallowing difficulties, speech difficulties, double vision, weakness or numbness in the face”. She went on to say “there was a small risk of complete paralysis, or severe haemorrhage which could cause death or severe neurological deficits”.   But she also wrote there would be risks if I did nothing, “If you did nothing the cyst would continue to cause more trouble and you could have significant problems with weakness of arms and legs, even more difficulty with speech and balance and the nerves to your face including the swallowing nerves could be affected and paralysed”.

Friends who have read that letter often ask where I got the strength to go ahead with surgery, but to me there was no alternative and so no hesitation, because when I compared the outcome of doing nothing with the outcome of any of the surgical risks, the possible eventualities were, in parts, similar. So I concluded I would rather try to do something to resolve my symptoms than sit back and do nothing and let my condition deteriorate. If that something was brain surgery then so be it!

My friends also found it peculiar that I appeared unfazed by the prospect of brain surgery and appeared more upset that I might need to have my hair shaved off!  It was true, the thought of losing my long hair was a very big deal to me!

As I sat at home waiting for the big day my symptoms began to get worse and new ones developed. My lips, tongue and left cheek had begun going numb. My heels were also starting to go numb making it difficult to walk at times. I started having difficulty swallowing, at the time I found it hard to understand how one minute I would be eating and swallowing as normal and then I would be struggling with it, it was as if I would suddenly forget how to swallow, what we all might think as a simple daily thing that we do without thinking about it was suddenly becoming a struggle.

These new symptoms brought to mind the letter from the neurosurgeon and the warning she gave if I did nothing then the cyst could go on to cause the nerves to my face including swallowing nerves to be affected and paralysed, and so these new symptoms reinforced my decision to go ahead with surgery. They also made me feel a bit anxious that permanent damage might occur before I could have surgery. It was all a waiting game, but in retrospect I really hadn’t had long to wait. Only four and a half weeks had passed between that first day I had gone to the doctors with symptoms to the day of my operation!

I mentioned earlier that I had a habit of googling everything but when I learnt the name of the procedure I was having was a craniotomy fenestration I made the choice not to google it before my surgery. It was months after, when I was back home that I decided one day to google it, oh my gosh you will never know how relieved I was that I hadn’t done that before the operation!

On the subject of googling, I will admit to asking google if I should stop drinking wine and smoking before brain surgery! The common consensus of the internet was yes! So one week before surgery I managed to stopped smoking…but I carried on drinking wine right up to the penultimate night!


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I’m a 40 year old blogger virgin wanting to share my story about having an arachnoid cyst and brain surgery (part 1!)

I’m a 40 year old blogger virgin wanting to share my story about having an arachnoid cyst and brain surgery (part 1!)

The title pretty much sums up the bumpy ride readers may experience as I get to grips with what I’m doing (or don’t get to grips as the case may be!)

I’m on a journey of recovery after brain surgery – a result of the discovery of a posterior fossa arachnoid cyst a year ago (March 2015) and I wanted to share that story with others, firstly to raise awareness of arachnoid cysts and secondly to document the journey I’m on.  Although I’m almost one year post surgery I’d like to start my story from the beginning!  So here goes..

I went to my gp at the beginning of March 2015 after my colleagues had nagged me at work (because I had taken several dizzy spells in their company!). I don’t like going to the doctors, for some reason I feel like I’m wasting their time, but after much nagging and threats of being dragged there by my colleagues I eventually went!

At this point my symptoms were nausea, occasionally followed by actually vomiting, a swooshing/ringing in my right ear, a sensation of falling inside my head and occasional weakness in my wrists. My gp gave me anti sickness tablets on the thought it could be vertigo, however he said he wasn’t convinced with that diagnosis. He asked me “if I had always spoke like that”, I have no idea what he meant by ‘like that’, what he meant was had I always slurred my words…not unless I was crawling out of the pub! He also discovered I had a nystagmus in my left eye.

Over the next 2 weeks my symptoms got worse and new symptoms appeared. Colleagues also started noticing and commenting that I was slurring my words (I’m sure they thought I’d came to work still intoxicated from the bottle of wine the night before!).  I began getting pins and needles in my arms, hands and face, and sometimes they would go numb completely. When I first woke up I couldn’t lift my arms or head for a while as they were numb. My balance and coordination were ‘off’, I was getting severe headaches (I never get headaches) and I was constantly tired. I made another appointment to see my gp, I couldn’t get seen for a week, and much to the annoyance of my colleagues (yes they were nagging me again!) I accepted to wait the week.

On the day of my appointment I was busy planning things I needed to do for the arrival of friends who were travelling up today from Hull and staying a few days. The last thing on my mind was getting admitted to hospital…but that’s what happened.  Firstly though let’s talk about the appointment, my  gp did several tests, one which was walking heel to toe, he demonstrated what he meant and he did it with ease, my turn…as I went to put one foot in front of the other I staggered off balance, I tried again but to no avail, each time I attempted it I would lose complete balance and stagger to the side. He asked if I was surprised I couldn’t do it, I wanted to reply yes I was surprised since I’d just witnessed my 50+ year old doctor manage it with no problem, but my actual answer was just yes I was shocked!  He then asked me to stand with my eyes closed, but as soon as I closed my eyes standing up I had the sensation I was falling and I began to sway. At that point the doctor told me he wanted to discuss his findings with his colleagues and then he would get back to me. So off I went with my head full of things to do for the arrival of my visitors. I drove to Tescos – less than a quarter of a mile from the doctors’ surgery – when my gp phoned. He wanted me to return to the surgery to collect a letter and then to take myself and the letter to the hospital for further tests. I am sitting in my car in a supermarket car park trying to process what he had said, when he continued to say he wanted to put his cards on the table and say he suspected it was MS.

Once he had hung up I drove home (food shopping for visitors abandoned) on autopilot and I was wondering what I was going to say to my partner, that was my biggest concern at the time.  I knew she’d still be in bed (well it was 8am and we were on holiday!) and I remember feeling bad at having to wake her so she could take me to the hospital…oh I forgot to mention the doctor didn’t sound too pleased that I was driving with my symptoms!  So I crept into our bedroom and watched sleeping beauty for a while before finally plucking up the courage to drop my bombshell.

We both sat on the bed in shock and decided the best thing to do in a time of crisis was to go for a cigarette (a dirty habit I know and one I’ve kicked but more of that later!). We decided Lindsay (oh I’ve not formally introduced you to Lindsay, she is the sleeping beauty that is my partner!) would stay at home and tidy the house and do the food shop for our visitors and her mum would take me to the hospital where I would have a quick test and I’d be back home before the visitors arrived…how wrong I was!

After my arrival at the hospital I expected to be seen straight away by the consultant named in my letter from my gp, however I was sent to the admittance ward where I assumed I was waiting to see said consultant!  Then the nurse who was dealing with me started to put a band around my wrist and I naively asked what that was for!  She said everyone had to wear an admittance band for i.d purposes.  My naïve response was – oh I’m sorry you’ve made a mistake, I’m not here for admittance I just need to see Doctor so-and-so and then I’ll be on my merry way!  She looked at me with a weary expression and said I wish doctors would tell their patients when they send them to the hospital they will be admitted so that an investigation to their symptoms can be carried out.  Oh but you don’t understand, I said, I’ve friends arriving from Hull in a couple of hours so I can’t stay long!

Well I am still on my recovery journey and I sadly tire easily, and I’m feeling weary typing so I’m going to sign off for now but I hope to continue my story over the coming days.  Thank you for reading this far and I hope the read wasn’t too laborious!

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